In the last year I met a brilliant nephrologist, with a great bedside manner to boot, through the PKD Foundation. At the time he had just joined the facility that will do Cheryl’s surgery as well as pediatric transplants at Children’s. He came to the facility with experience in research for new drug therapies along with transplantation on adults and kids and a bunch of other credentials.

I heard him speak at a local PKD Foundation meeting  about the research available on a no steroid protocol. As with many new ways to handle advancements in treatment for transplant after care it takes a while for protocol changes to happen with kids. Gage wasn’t able to be a recipient of a no steroid protocol (drats!) even though other centers around the country had gone that route successfully (ask my friend Rachel about her Bryce) for a while.

But it has happened. There is now apparently a no steroid protocol for kids and I think Quinn will be able to be one of the first kids on it at our hospital. How awesome is that?

While I’ve been conversing by email with this doctor (BTW, he freely handed me his card that day we met and said if there was anything he could do…) about Quinn’s impending transplant. When I mentioned to him that I was interested in Quinn being on the new protocol (and Gage reducing steroids because I’m certain they don’t help my boy’s unique propensity of aggression and impulsivity)  they hadn’t yet begun it but he was thinking that it would be soon, and here it is.

I emailed him a flippant comment about how I am always in the face of the transplant team and I hoped they didn’t flinch when he mentioned my name, this is what he said back to me…

“Not at all. They recognize you as a passionate and well informed mother for whom they have great respect.”

That was extremely nice for him to email me with that note. In fact, I saved it on my cell phone for future peeks at it when I am hitting a moment of frustration in being an advocate for the kids.

My latest advocacy efforts – besides the actual transplant, my nephew’s needs, and special education services have been to get a kidney removed from Quinn. As with Gage, she has excessive urine output and it impedes her social life and her emotional well-being because of her being self conscious about it in how it relates to overnights.

I really had to jump through hoops to have one of Gage’s removed. Originally I had wanted both out, but Dr. Kind talked me into one (in case the transplant failed and he went on dialysis, at least he would have output and would make dialysis less complicated), then she said we could go back and have the other one removed.

For Gage, there was a face-to-face team meeting, a 24 hour urine collection and appointments with a urology surgeon, and calls and reports back and forth. My point was that they were already going to be in there, why not get it out? There were (are) people that believe that since they have never done it and they don’t have scientific proof that it would help with the reduction in urine output that we should leave the kidneys in. Sometimes though, because all of our kids are different (the biggest understatement in the world) us parents know them best. We noticed a small reduction in urine over the months following Gage’s kidney removal. Then one pull up, not two. Then dry pull ups and then none. I will always believe that the removal of the kidney is what helped. A person who denies that could be a reason is unreasonable – because we can’t know for certain.

If we as a medical community never try anything new, within reasonable, safe limits of course, nothing will ever improve. That makes sense, right? Because if there weren’t any different ways to do proceed for kidney patients, like dialysis or transplant then where would we be?  You realize that someone, somewhere looking at a renal failure, dying patient said, “Let’s take all the blood out of them and clean it! Yes! Just clean out the toxins then put the blood back in!” And if someone hadn’t said to themselves, “You know, I think we could take a kidney from a deceased patient and give it to someone else.”  Then Gage would already have died and we’d be watching Quinn die. We have to keep moving forward, trying and failing and trying and succeeding.

Deep thoughts for a Wednesday, I know.

So, I’ve moved on from pushing for the transplant before the need for dialysis to the removal of the kidney. The sentiments about me from the doctor above flashes through my head because that is one way a team of people could think about me, and I hope that is the case.

Again, if they don’t, that’s okay with me. I sleep just fine at night.